Thursday, November 6, 2014

It's November now...

Well, It's another month.  I wanted to post more frequently than that.  I don't know how all these moms with little kids post on their blogs so frequently.  I could probably post a little more, but I fall asleep at the computer quite frequently, which makes it difficult to type up a blog post.  Since I took a long nap this morning during my IVIG infusion, I feel pretty awake right now, so it's a good time to post.  Plus, I can't really do much during my infusions because when I do, I get a headache and my BP goes up.  It kinda sucks.  It drives me crazy to have to lay in bed for 2 days and have someone do everything for me.  I'm way to independent for this.  It took me about 6 months total before I really let my home nurse start doing a lot for me and then it wasn't until I got my second nurse that I started to give in.  My 1st nurse really didn't try to do much for me.  My second nurse really had to start insisting that I allow her to do things for me.  She wore me down though.  Now she does everything for me for the 2 days I get my infusion and we have become very good friends.

Sleeping for me has been really off lately.  I never sleep longer than 2 hours at a time at night before I wake up to either go to the bathroom, or because I am in pain, or because of muscle spasms.  I posted about that in detail in my last post, so I won't go into that any more, but to say that I had my consult with the specialist.  She is concerned I may have central sleep apnea from my MS.  I had a sleep study last week.  I'm still waiting on the results of the study.  It wasn't as bad as I thought it would be.  I didn't think I was going to be able to sleep with all the stuff all over me, but I was so tired that I fell asleep as soon as she left the room.  I'm still waiting on the results though.  It's been a week as of today so I hope to get them soon.  If there is any apnea, then I have to get another study done with the machine on to get the settings correct.  I'm hoping there is actually something they found that can be easily fixed.  Nothing else I have can be fixed.  Maybe this can be.  I'm just not confident that it can be helped.  I guess I've become cynical.

Wedding preparations are coming along.  I can't believe the wedding is in only 2 months now.  Rachael is starting to get really stressed out.  School is a lot busier this semester.  Tapestry didn't give her any classes this semester, so she had to get a job at Joann and they don't pay as well, so she has to work three times as many hours to make as much money and doesn't get off until 10pm 3 nights a week.  On top of that, she is planning a wedding.  Her photographer fell through the day before their engagement photo shoot, which pushed back their engagement photos getting done, which meant they can't get their engagement photos on the back on their wedding announcements since they need to get those ordered ASAP so they can get them mailed out by the end of the month. Today, I created an alternate back for their invitations so they can get them ordered.   Everything else seems to be going ok though.  Once they actually get their engagement photos done, I'll post a few photos from their engagement photos.

This Sunday is the primary program.  We have had 3 week of practice and the kids sounded pretty good last week.  I'll post on Sunday afternoon and let everyone know how it went.

Monday, October 20, 2014

Spiritual weekend

This weekend was a wonderful, spiritual weekend.  We had stake conference this weekend.  For those of you who are not LDS, stake conference is a conference for  a group of congregations, also known as wards, that make up a stake.  Stakes are kinda like a school district.  There is usually about 10 wards in a stake.  We all meet together and listen to our stake leaders speak to us.  We have them twice a year.  This conference, we had a visiting general authority from Salt Lake.  He was a member of the Quorum of the 70's.  His name is Elder Hamula.  He is an excellent speaker.  The  purpose of a 70 is to testify of Jesus Christ.  He did exactly that when he spoke and I could feel the spirit of the Holy Ghost testify to me so strongly of the truthfulness of the gospel.  I'm so grateful that I have the gift of the Holy Ghost to be my constant companion.  I am also grateful for the knowledge that my Heavenly Father loves me.  It makes these challenges I have to endure a little easier at times.  I'm not as likely to lash out at God even though I get frustrated at the never ending pain.

My most recent frustration is lack of sleep and daily fatigue.  I fall asleep all day long while I try to do things around the house and in my daily like.  Many of the things I fall asleep doing are not very safe to fall asleep during such as driving my wheelchair, cooking showering, washing dishes, sewing, standing and just about any other way you can imagine.  I broke my ankle on January 1st by falling asleep on the edge of the bathtub and falling over.  I rolled over with my entire weight on my foot and bent my ankle in half.  I had to have plates put in my ankle.  I spent 4 weeks in the hospital after that fall between complications after surgery and rehab.  I broke my ankle on my good leg, so I had to have a lot of rehab.  I'm not anxious to repeat that again.

My neurologist referred me to a sleep specialist last week.  I think I see 7 specialists on a regular basis now.  .On Wednesday, I had a 45 minute consult with the sleep specialist.  She is going to test me for sleep apnea.  She thinks I might have central sleep apnea from the MS.  I may not be breathing deeply enough to be getting enough oxygen at night because the proper signal is not getting from my brain to my airway.  She said it is a little more challenging to treat but it is treatable.  I have to have a sleep study done.  I am just waiting on insurance to authorize the sleep study.  She also put me on some medication during the day to keep me awake so I am not falling asleep in unsafe situations.  I"m still working on finding the right dosage, but I noticed a big difference even with the dose not being right.  I hope she can figure out what is causing my sleep problems.  I'm tired of not sleeping well  I rarely sleep more than 2 hours at a time at any given time.

Saturday, October 11, 2014

Gaga Ball Game!!

It's been a while

I haven't posted in 2 1/2 years but I decided I'm going to give it a try again.  Someone said I should start writing about my life and I told her I used to blog and I thought I should document all that I go through since I don't keep a journal.  This will just be a public one.

The last time I posted, I talked about being in a wheelchair and possibly getting a baclofen pump.  Well, I am still in a wheelchair and can only walk a little bit.  I was able to walk around the house without any assistance this time last year, but on January 1st, I fell and broke my left ankle.  I had to have surgery and ended up spending 4 weeks in the hospital between the regular hospital and rehab.  I also had another flare to my right leg that took away all my work and weakened my right leg more.  I'm just now starting to walk a little better but I still have to use the chair in the house.  I'm progressing a little bit each week.

I got a baclofen pump in July 2012.  It has been the best treatment ever.  My spasticity is under control for the most part.  If at any point I have increased spasticity, I just have to go to the doctor and he adjusts the pump dose and then my spasticity is under control again.  IT IS AWESOME!!!  I have to get it refilled every 6 months, which means going to the hospital and having it filled with a needle under x-ray.  The pump battery will last about 7 years then I will have to  have the pump replaced.

I'm not going to update anything else about my MS.  I'll add things about my MS as I post more as time goes on.  There is too much to update in one post.  It will take me hours, plus it will depress me.

Now for the big news of the year.  Rachael is getting married.  She and Zack started dating in March I think.  They got engaged over the 4th of July weekend.  They will be getting married January 9th with a reception on the 10th.  Their wedding will be held in the Texas San Antonio temple.  She is also in her senior year of college and will graduate in May with a bachelors of Fine Arts in Dance.  She plans on getting a job as a professional dancer and teaching on the side.  Zack is currently in school working on some kind of computer degree but is thinking about changing his major to chiropractics.

The boys are doing well.  Andrew is working on his Eagle project now.  He is going to make a Gaga pit at the church in the picnic area in the back.  Andrew learned about this game at scout camp and it is hugely popular among his fellow scouters.  He will have plenty of volunteers to help him if he can ever get it done.  My kids have inherited their fathers procrastination.  There is a video about Gaga in the next post.  Andrew also got his license this year.  That is a huge help to me.

Jeremy is in boy scouts too and he is still in Tae Kwon Do.  He is a purple belt now. He loves it and plans to go all the way and continue with it for the rest of his life.  He is one of the happiest boys I know.  He always has a smile on his face.  He loves everyone and everyone loves him.

Stan is still bishop and he is doing a great job.  He has gotten big time into board games.  Our family room has a big shelf that looks like a shelf in a comic store.  They are a lot of fun though.  Way better than spending the evening watching TV.  I prefer to play the cooperative ones with him.

There is more to me that just my MS, so here is a little about what I have been doing.  I haven't been able to sew as much this year, but I have been doing some.  Still mostly bags.  I have some Christmas tree skirts I started for Christmas last year that I need to finish but I haven't touched them.  I still make one or two things a month.  I've also been called as primary president, so that keeps me a little busier.  We start practicing for the primary program tomorrow.  I had no idea that the presidency had to write the entire program themselves.  That was a lot of work and I'm still nervous about how it's going to turn out.  I hope it's long enough and I hope it flows together and makes sense to the congregation..

My goal is to post every few days during my rest time in the afternoon.  I hope I can do that.  This would be a good way to keep a record of my life.

Sunday, April 15, 2012

Busy week

This has been a crazy, busy week.  I started off the week with Easter of course.  It was a nice Easter.  Stan had to work all weekend.  He was on call and the normal night shift person injured his back, so Stan had to work both Friday and Saturday night.  He didn't go to church on Sunday.  He was awake when we got home though and had the ham in the oven. We had dinner then Bryon and Margie came over and we did an Easter egg hunt with the cousins.  We watched a few funny Youtube videos and listened to a few funny songs too.  It was a good day.  Nice and calm.  No drama, no problems.  All was good.

Monday I had PT and I had an appointment with Dr Westgate.  It was my normal every 3 month appointment to get my Botox in my leg.  She was pleased with the progress I've made with walking.  I haven't posted on here much about that since last year when I had to start using a wheel chair, but since then, I have improved a lot.  Just before Christmas, I started walking just a little bit.  At first, it was only a few steps and it was so slow.  Now, I can go 40 feet or so before I have to rest.  I can't walk with shoes on though.  My toes drag too much so my shoes cause me to trip.  I have to use a walker too.  I've been trying to walk some around the house when I can.  I walk in the kitchen when I am making dinner and while I am sewing.  Anyway, Tuesday, I had an appointment with a new doctor.  He is evaluating me for a baclofen pump.  I am taking oral baclofen to treat the spasms I have.  They are the worst in my right leg, which is why I get the Botox, but even the Botox can't take care of all of them.  I can't handle the side effects at a dose that is effective enough to treat the spasticity.  By putting in a pump, they can give me the baclofen directly into the spinal cord and then it will be a much lower dose, so almost no side effects even though it will be way more effective. I then had Cub Scouts at my house; we did sewing and wood working.  Wednesday wasn't busy at all, but I needed to rest all day.  I was exhausted from the previous 2 days.  Thursday was just errands and normal stuff.  Friday brought PT and babysitting in the afternoon.

I was trying to be really careful last week to not over do things because if I get too exhausted, I set myself up for a flare.  It turns out, I was already starting into a flare and didn't even know it yet.  Starting around the 3rd of April, I started having a burning sensation around my chest, along with a lot of pressure and occasionally an electric shock feeling.  It is commonly called the "MS Hug".  Not the kind of hug you really want though.  A few days later, I had a week of overwhelming fatigue set in.  I didn't think anything of it at the time.  I thought it was just the change in weather since it was getting hotter.  I told Dr Westgate about this at my appointment and she was a little concerned.  Thursday, the weakness started.  The strength in my legs is down about 50%.  Considering I don't have a lot of strength in my right leg anyway, it took a lot away.  Now losing strength in my left leg, my walk is more of a shuffle, when I can walk at all.  I've had some bladder issues with this flare as well, but I won't get into those in such a public place.  I'll be calling Dr Westgate first thing in the morning and I suspect I will be starting steriods by tomorrow afternoon.  I'm not looking forward to this.  Stan gave me a blessing this afternoon though and I feel much better after that.  I was told that I would regain all that I had lost.  That was a huge relief.  It was frustrating me that I had just lost 6 months of physical therapy work and I wasn't looking forward to having to work again to regain that.  It seemed like an endless cycle.  I'll try to post later this week and keep everyone posted on my progress on this flare.

I decided the best way to allow people to download the Woman of Faith block instructions was to just upload the instructions to  4shared.  They are in a Word Document.  It anyone can give me tips on posting tutorials on blogs, I'm all ears.  I'm not very tech savvy when it comes to the internet.  I know how to do the things I do very well, but I don't do much on the internet, so not my area.  Feel free to share these instructions with anyone.  They are not copyrighted at all at this point.  The block is a very common block and the quotes are from the Book of Mormon and General Conference.  I think it would be cool for as many people as possible to be doing a Book of Mormon/Woman of Faith quilt.  We should share our testimonies through our talent and love of quilting.  If you do decide to make a quilt, please send me a link.  I'd love to see your quilt and your blocks.  Do you think it would be tacky for me to pin my own post into pinterest to get more people interested in doing a Book of Mormon quilt?  I don't care; I may do it anyway.  There isn't a blog/pinterest police to stop me and I don't think it is against their terms of use. 

I almost forgot the link  Women of Faith or Book of Mormon Quilt Block 1

Saturday, April 7, 2012

Great class

I took a great class today at A Quilter's Folly.  It was about quilting a quilt using your regular sewing machine.  I love the look of a quilt after it has been quilted and  finished and washed and it shrinks up and gets all soft.  All I can do is a stippling stitch.  I don't have any interest in hand quilting.  Hand work is not my cup of tea by any means.  I have tried to do things that are fancier, but it has always looked awful.  This class is all about how to create beautiful machine quilting with your sewing machine.  No long arm quilter needed.  That's good because I won't have the money or the room for a long arm machine for a very long time.

The class was taught be a man named Lane.  He is a self taught quilter.  He does all of his quilts on his home machine.  They aren't even fancy machines.  He uses older machines even, not even the fancier quilting machines that have the longer arm area with more room for the quilt.  I started with some easier stuff and then went onto some harder stuff.  Some of it looked pretty crappy and some of it looked pretty good.  I didn't do too good on the stuff that involved back tracking over previous stitches.  I need to practice that.  We have homework to so I'll get more practice though.  For practice, we have to do a large square, like a 15x15 square quilt area and try to fill the entire thing.  I'll add that to all the other sewing I have to do over the next 2 weeks.  Why do I do this to myself.  My list of sewing projects I need to do just seems to be getting longer and longer.  Unfortunately, none of the things on my list are for me.  They are all for other people.  I need to start telling people no.  That has always been something I've had a problem with.  I say yes, yes, yes, yes, until I am in over my head, then and only then do I say no.  Anyway, that is an entirely different post.

On a different subject, I am getting my next round of Botox injections on Monday.  I am very ready for them.  The spasticity isn't as bad as it got in December, probably because I was so stressed out with the holidays in December.  It's bad enough though.  I start to forget how bad the spasms are when the Botox is working until it wears off.  I just can't take enough Baclofen to make a difference during these times.  I'd do nothing but sleep.  Speaking of Baclofen,  I see a physical medicine specialist on Tuesday to find out more about getting a Baclofen pump.  I know I will still have to undergo a test injection to make sure it is even going to be effective.  That is the part I am really  not looking forward to.  If it works, I'm not looking forward to the surgery either, but at least I know I will get good pain meds after surgery.  I'll just take things one step at a time though and make sure I get plenty of priesthood blessings.  I know God will help me through this.  I know if this is what is best for me, it will work out for the best.

Monday, April 2, 2012

Women of Faith Quilt, or Book of Mormon Quilt

Here is the first block for our block of the month program we are starting at our church quilting group.  Our group is called Sisters in Stitches.  It is a group of LDS women who meet once a month to share our love of quilting and to teach new sisters how to quilt.  We decided recently that there are other quilts about Women of the Bible and such, but we wanted one that represented the LDS faith.  This one is going to be all about our testimonies as LDS women.  

For those of you who don't know what LDS means, it stands for Latter-Day Saint which is how we refer to members of the Church of Jesus Christ of Latter-Day Saints, also known as Mormons.  

This block is called the Cornerstone.  I chose this one because the Book of Mormon is the cornerstone of our religion.  President Ezra Taft Benson said " The Book of Mormon is the Keystone in our witness of Jesus Christ, who is Himself the cornerstone of everything we do.  It bears witness of His reality with power of clarity."  In the introduction of the Book of Mormon, it says, “Concerning this record the Prophet Joseph Smith said: “I told the brethren that the Book of Mormon was the most correct of any book on earth, and the keystone of our religion, and a man would get nearer to God by abiding by its precepts, than by any other book.”  I chose the colors I did because of the YW colors.  In the YW colors, green is the color for knowledge.  We receive much of our knowledge of the gospel from the Book of Mormon.  The gold color stands for virtue.  As a virtuous women, I will be able to return to live with my Father in Heaven.  I plan on using YW colors for all of my quilt blocks.  For me, this is going to represent more a Women of Faith quilt than just a Book of Mormon quilt.  This past year, I have really struggled with my relationship with my Heavenly Father and my faith has been tested.  This quilt is going to represent that test of faith that I have had.  It is going to be very personal for me.  I hope other people can find their own personal journey through their own quilt.

I plan on putting the instructions for this block on the web site some time soon.  I have it in word format and I'm not sure what the best way to put it on here would be, especially since I have some pictures included that are jpg format.  I'll think about that and get those instructions up soon.  I'm sure there are other members of the church who would love to make a Book of Mormon quilt.  I hope to have the instructions up by the end of the week.  Bug me if I don't get them up, if there is still anyone reading this blog.